I just watched U-Tube videos of people pre/post jugular vein stent as in liberation treatment and I can't believe the improvement within 24 hours!!! I mean WOW! Tomorrow I see a MD that trains interns and boy is he going to learn all about it! I'm still stunned. I mean the lady went from wobbling to walking almost perfect!

Ed

pre - http://www.youtube.com/watch?v=JO3Dn...eature=related
post - http://www.youtube.com/watch?v=KYNhYtVojSQ&NR=1

Eddie keeping checking youtube. There are tons of people who have been helped by this "Liberation Procedure." It's called CCSVI. It is hard to find a doctor willing to do this.

They have to be specially trained in this procedure, not just any Vascular dr. or Neuro. You need a board certified, Interventional radiologist. The FDA has put a halt on doctors from doing this procedure. They want clinical trials, which will take years.

Many people find doctors on their own, or travel to other countries to have this done. This is not new. They have been doing them for, I think a year and a half, maybe two years, mostly with very good results.

Some don't see improvements or the wrong doctor did the Ultrasound and surgery and did not find anything after seeing it was on the ultrasound test.

I truly believe this is the problem with many people with MS. They have Multiple Stenosis.

Yes, many of such have been on utube for over a year. However, the follow up is not always so nice. Many have to go back 2 or 3 times and it costs. Some see no results.

At it's best, CCSVI is not a proven cure, but helps relive sx - in a minor few symptoms have got worse. But, who knows if they had a competent surgent... So many are going out of the US . We have no long term studies.

This is a good hope for us, but it is far from a cure or even safe to some few.
I thank Dr. Paolo Zamboni who reported abnormalities in the veins draining the brain and spinal cord in people with MS. However, I stand with caution.

If the test and procedure were near me; I might consider the test then possible treatment by a facility I consider excellent. However, we have just began to grow in the SE. We will grow slow as is the US way. i will not go out of my area. It is too much of a risk at time.

BTW - to quote another "I truly believe this is the problem with many people with MS." I agree.

Oh, Dr. Paolo Zamboni recommends we still remain on our MS drugs after treatment aso.. I think I know yours . Hence, I post for others also.

The treatment cost --
US test - aprox 2500.00
US procedure - 10 to 20,000 (most over 10)
insurance up to the provider codes and our co-pay

if you want this. go to facebook. I've seen more there there then anywhere. U tube is good, but I recommend a facebook search of all areas near you - then expand.


Good Luck Hun

Stents are not meant for veins, but arties or something and can dislodge and cause terrible things, I would not allow a stent nowadays in my body. wheelchairkamikaze (marcs) has good ccsvi info in his blog. It is not a proven tevhnique yet. The jury's out.

I've been reading a lot about this and although it sounds promising there are a lot of conflicting reports out there. First of all, not everyone with MS has the problem of the crooked veins. In the Buffalo study, I think they found 60% had it whereas Zamboni found almost everyone had it. Then there's the issue of balloon angioplasty vs stenting. A doctor in CA had to halt his study because the stents were causing major problems. (death in a least 1 case) Zamboni is only advocating the balloon procedure but those results can be temporary. I used to work at a medical device company and am really not wild about the idea of having a stent. My theory is that this is an advancement in understanding the disease and possible treatments but is only 1 piece of the puzzle and probably does not apply to everyone. I am really curious if I have the venous insufficiency though - I think it would be useful for people to at least have the test done. I've seen the youtube vid of the lady demonstrating how her walking has improved but would be curious to see her 6 months on. There's a video you can watch from the NMSS site where the doctors talk about CCVSI in great detail. It's really good.

Well the Dr I saw today loved every word I spoke from 3d images (such as my pic) to what I opened this thread about. He was as excited as I am and will research it tonight. He said even if it's only a few, thats still a few that get some of their life back. He's a great guy and been in the feild 20+ yrs. I'm sure as heck getting doppler and/or MRV tests done or scheduled by end of this month. MRV - I learned something yesterday because I only knew of mri,pet,ct. Now I see there's mri, mra, mrv. Odd that ccsvi is vein or odd that artery isn't issue. Makes so much sense that reducing blood flow to brain would cause plaques or scar tissue? All I know is I can't wait to get scanned and if it's a question of stent = regaining strength & sensory or progressing..Do I really have to say what my choice will be?

I saw/mentioned it to a world known surgeon today. Told him cause he travels worldwide. Matter of fact he just got back from somewhere. His waiting room, hallway, office, every available inch of wallspace is covered with awards & magazine covers on him. He heard of it and said if MRV & dopper show blockage not to hesitate. Simple procedure said he. He revised my colostomy 6 months after a-hole in FL created it wrong. He fixed it up making intestine stick out slightly (1st idiot had it recessed) in about 45 minutes. He doesnt cut..uses camera and a few holes. He's the best surgeon I'll probably ever know so today I reinforced CCSVI in his head. Told him about the U tube videos. My job's done for today.